Freedom from G-Tube Dependency: Part 1

In the last blog post, I promised a series on the most frustrating obstacle we've encountered in parenting Josie: G-Tube Dependency.  It's a topic I've avoided addressing for a long time, and as I sit to write about it now, I am still filled with reluctance.  

Josie has had some really terrible health issues to contend with in her young life including Chronic Lung Disease.  Josie was born with unhealthy lungs and during her first year on earth, she required oxygen to breathe and would frequently go into respiratory distress which required immediate hospitalization. In August of 2010, Josie experienced her most severe respiratory distress episode and she spent several weeks in the pediatric intensive care unit on a ventilator.  You can read about that HERE and HERE.  While no one could tell us what caused this strain on Josie's lungs that nearly took her life, one of the theories was that she was aspirating on her formula.  The surgeons made a decision to insert a Gastrostomy Tube (G-Tube) directly into Josie's stomach.

The G-Tube prevented further aspiration because instead of sucking a bottle and risking the formula getting into her lungs, Josie had a little port in her abdomen where we could insert a tube, program a feeding pump, and have her nourishment delivered directly to her stomach.

One potential side effect of no longer having oral feeds is that a child can lose his or her natural instinct to eat.  This is exactly what happened to Josie after receiving her G-Tube.  This is different than having a child who is a picky eater or a child who prefers to graze.  Josie's hunger cues were destroyed.  She did not want any food or drink near her mouth.

Over time, this really began to bother me.  It was one more thing that made Josie different - really different.  Any caregiver who kept Josie had to be trained on how to use the enteral feeding pump and that was intimidating to a lot of people.  If the settings programmed into the pump got messed up, you had to be able to reprogram the pump and understand all of the nuances that made it work.  Josie had to be watched closely at all times because if she got a hold of the tubing and pulled, she could easily pull her Mic-Key button out of her abdomen.  Putting it back in would then become an urgent priority, as the hole could close up within hours requiring her to have a whole other surgery to get a new one.  And then there was just the day-to-day inconvenience of having to use medical equipment to feed your child.  You couldn't just throw a couple of chilled bottles and a jar of baby food into a thermal lunch bag and hit the town.  Awhile back, I blogged about having a picnic with the girls.  As you can see, transporting the pump, bag, tubing, and pole to the park along with two children would have been a spectacle to say the least, so we picnicked on our front porch:

  My frustrations with the G-Tube coupled with my desire for Josie to have a life as free of medical equipment as possible led me to start seeking a way to get her to start eating orally again. After several months of being fed exclusively via G-Tube, Josie received medical clearance to start feeding therapy to build her oral motor skills and stimulate her interest in oral eating.  We started feeding therapy with an Occupational Therapist and Speech and Language Pathologist who specialized in the SOS Approach.  The Sequential Oral Sensory approach focuses on increasing the child's comfort level by exploring their food in a playful manner (source).  We were encouraged to have tea parties, have all family members use Josie's cups/utensils at family meals, and allow Josie to experience messy play in her food.

When the goal is a G-Tube wean, time is of the essence because the longer a child uses a G-Tube, the harder it is to teach a child to eat orally.   At the time, I didn't realize there was more than one approach to feeding therapy or G-Tube weaning, but after using the G-Tube for a year-and-a-half and making no progress in SOS feeding therapy, I began to search for other answers.  That's when I discovered a behavioral psychologist who specialized in feeding disorders who had an impressive track record of helping children get off of the G-Tube.  After a swallow study and an endoscopy to ensure that Josie's GI system was in proper working order, we were given clearance to begin behavioral feeding therapy.

What happened next was absolutely incredible.  We became religious about using the behavioral modification techniques that we were learning in therapy,  and within a matter of 3 months, Josie was eating and drinking orally.  Three months of implementing the Applied Behavior Analysis (ABA) approach was all it took, and Josie no longer used her G-Tube for nourishment. 

Even though our commitment to the ABA method was steadfast, and even though her progress was impressive, it was hardly a Pentecostal tent revival in which a preacher laid his hands on Josie and she was freed from her G-Tube dependence.  In fact, it was simply a jump start on a journey that would prove to be anything but easy.

Four times a day, Travis or I would sit with Josie and encourage her through every single bite and sip from a straw.  Josie still did not want to eat.  We just learned how to handle her oppositional behaviors.  Once again, every single care provider had to be trained on how to implement the behavioral therapy techniques to ensure that Josie met her minimum food and hydration requirement for the day.  And when Josie got sick with a stomach bug/diarrhea, we would need to use the G-Tube to get extra fluids in her, as it was next to impossible to get her to drink more than 4oz per meal, 4 times per day.  But we still felt celebratory as she no longer depended on the G-tube for her day-to-day nourishment.

Fast forward to January 2014.  After a fun-filled week of a house packed full of relatives, gifts, and attention, suddenly everyone left - including Dad.  Travis had to take an international business trip and his absence, combined with the holiday routine disruption, left Josie upset and confused.  She acted out by not only refusing to eat, but by throwing every single plate/utensil/cup that came within arms reach of her.  We regressed back to spoon feeding Josie, bite-by-bite because setting a plate full of food on her tray was no longer an option.

These feeding issues that we thought we had conquered suddenly re-emerged with a vengeance and we had no idea what to do.  But we knew where to turn.  I contacted the behavioral psychologist who had originally helped Josie get off of her G-Tube and I begged her to get us into the intensive feeding clinic that they hosted at the University of Iowa.  I was told that the feeding clinic was booked solid through September 2014.  However, the very next day she called me back with incredible news - they had just had a cancellation for February - could we be there next week?  I immediately called Travis and asked if there was any way we could put our lives on hold and drive to Iowa with the hopes that our almost-4-year-old would spend a week in intensive therapy acquiring the skills necessary to feed herself independently.  He said "Call her back and tell her we'll be there."

To be continued...

CCE's Breakout Star

I'm pregnant with two toddlers - I'm too tired to blog!  Wah Wah!  I know it's getting old but it's the truth.  However, I assure you that I'm cooking up an extensive series about the most frustrating obstacle we've encountered in parenting Josie and the steps we have taken to overcome this obstacle.  It's taken me a long time and a lot of therapy to be able to blog about it so just bear with me.  

 In the meantime, I hope this little dose of CCE's breakout star, "Little Mother Hen," is enough to tide you over...

And "The Resolution" himself is cooking up a resolution to the biggest barrier to my ability to blog these days (Hint: It's called a "cloffice" and it should be done in early March - woo hoo!).  So, lets just hang in there, and we can soon celebrate a day that the cobwebs are dusted off of CCE and this little old blog sees new life!  

(muttered unintelligibly under my breath) As much 'new life' is left in my body after my three darling children have sucked me dry!

Huh?  Did you say something?  No, I didn't hear anything.  

See you soon! 

Happy Birthday YaYa!

Today we celebrate the birthday of a very special grandma, better known as "YaYa".  YaYa dedicated her life to raising two wonderful sons - one of whom I became so fond of I decided to marry.  Like many women who relished in the joys of motherhood, YaYa eagerly anticipated the day that she would become a grandma.  While her oldest son, Corey, made that happen pretty efficiently after he got married, Travis and I drug our feet a bit.  We were busy moving to new cities, pursuing our careers, and indulging in the freedom that a childless lifestyle affords.  One night, more than seven years into our marriage, Corey told us that his mom had claimed that she'd given up hope that Travis and I would ever decide to become parents.  Travis and I had a hard time containing our giggles as the very next day, we planned to announce our intention to adopt.  

You can imagine Travis' mom's reaction - both she and Travis' dad were moved to tears.  Little did they know that within the four years that followed, we would be giving them three additional grand babies to love!  And that's exactly what YaYa has done!  All of her granddaughters are so blessed to have this fun, vibrant, nurturing, and supportive woman as their grandma.

YaYa is celebrating a big milestone birthday today.  I promised her I wouldn't tell you which one but it doesn't matter because I assure you, you would not believe me anyway!  Without further ado, YaYa, this one's for you:

Happy Birthday, YaYa!  We love you!

Little Mother Hen Continued...

Since posting about our "Little Mother Hen" yesterday, Merryn offered further demonstration of her take-charge tendencies that beautifully illustrate my point.   

Exhibit A:

Every morning Merryn wakes up, goes potty, grabs a handful of books, climbs in Josie's bed, and proceeds to "read" to her.  This morning when I walked into the girls' room, Merryn was reading the yoga book, and Josie was "hanging upside down like a bat," per Merryn's directive:

Here's a little snippet of video for your viewing pleasure:

As adorable as that is, things don't always go so smoothly when Merryn tries to call the shots.  

Exhibit B:

Here is a sequence of clips where Merryn attemtps to feed Josie.  In the last clip, you can see that Josie clearly did not want the piece of cheese that Merryn was forcing her to eat:

After witnessing this struggle, of course I had to step in and take charge.  Merryn did not appreciate me undermining HER authority and the whole incident resulted in this epic tantrum:

And what may come as the promise of refuge for Josie in the very near future...

Exhibit C:

Merryn wanders into the kitchen where I was tidying and she whipped a baby bottle out of her purse and informed me that she was going to feed the new baby.  She proceeded to "feed" my pregnant belly:

Hang in there, Josie.  Soon "Little Mother Hen" will have double the workload and maybe, just maybe, she'll back off a little bit!

Little Mother Hen

Last night we all gathered together in the girls' room as we do every night; Travis was seated in the plush, chocolate brown rocker with both girls on his lap while I sat on the ottoman.  Travis asked the girls what book they wanted before bed and Merryn requested the ABC book.  "The ABC Book?!  That one's boring" Travis lamented, as it truly is just a listing of the letters in the alphabet along with a picture of an item that begins with each letter.  "No, Merryn reads it to JoJo!"  Merryn  refuted.  Suddenly it all made sense and I explained to Travis that Merryn selected that book because it's one she can easily  "read".  Without skipping a beat, Merryn grabbed the book from Travis, opened it, pointed to the first letter and said "A.  A is for...what is A for, JoJo?  What's this?" and she pointed to the corresponding picture until Josie replied "Apple" at which point Merryn praised "Very good, JoJo!" and she moved on to B...

This tendency for Merryn to want to help/nurture/instruct/boss/praise Josie has earned her the affectionate title of "Little Mother Hen" around here and it doesn't seem to be going away anytime soon.  

 As a consequence of having relied on a G tube for so long, Josie has significant eating/feeding issues and she has been in intensive feeding therapy for more than 2 years.  Every day Merryn sits at the table and watches Travis and I implement the techniques we've learned in feeding therapy to help Josie finish her meals.  Recently, Merryn has taken an earnest interest in "feeding JoJo" and by "earnest interest," I mean Girlfriend throws a major tantrum if I decline to let her be involved in the process.  Merryn watches me crush up Josie's medications in her yogurt and she wants to do it.  She watches me shake the thickener into Josie's Pediasure and she wants to do it.  Then we watches me use the techniques we've learned in behavioral therapy (oversimplified version: "FIrst bite, then highly preferred musical toy of the moment") and Merryn wants to take over the process from doling out the food to pushing the button on the singing animal.

 The primary problem with Merryn's involvement is that our ultimate objective is for Josie to feed herself independently, but Merryn's primary objective is to enable Josie's dependence on her, so that Merryn will continue to be able to offer as much assistance as possible.

But "Little Mother Hen" does not stop at feeding.  She also initiates academic and therapeutic drills that she's learned by watching Josie's therapists and myself work with Josie.  She loves to wave flash cards in Josie's face and demand that Josie identify the item on the flashcard.  She loves to push Josie on the swing or play catch with Josie just like Josie's physical therapist does.

 Even when they're just playing, Merryn assumes her role as the leader of whatever activity it is.  The other day she insisted Josie play dress up dolls with her.  She handed Josie the doll with blond hair and said "This is for you.  This is JoJo." and she grabbed the brunette doll, held it up and said "This is for me.  This is this girl (pats herself on her chest)"  

Did you catch that Josie?  You've been given your directive - don't get it confused!

 And if there was ever a moment you would expect Josie to exclaim "That's ENOUGH!  Leave me alone!!!" it would be when Merryn accompanies Josie into the restroom, pulls up a stool just inches from the toilet, and grabs a stack of books and begins "reading" and drilling Josie about what's happening in the illustrations.  While most of us would prefer to do our business in private, Josie just takes it in stride.

 What baffles me (and makes Travis snicker) is how Merryn became this way.  Travis would sarcastically say "Hmm...she's a bossy little control freak.  Where could she possibly get that?!"  Okay, okay, I get it.  But still!  No one ever asked her to take such an interest in Josie's care and development.  We would never place those expectations upon her.  But she just inserts herself into these situations with such irrefutable authority so as long as it's not hurting anything, Travis and I just let her do her thing.  And I guess someday when Josie's had enough, she'll let her know one way or another.  Perhaps having a new baby to heap loads of unsolicited attention on will give Josie some breathing room. 

Until then, Little Mother Hen will find plenty to do to keep herself busy and "helpful" around here - whether Josie wants her help or not!  

How my parents announced Leanne's Down syndrome diagnosis to me

I saw a news segment recently that described Down syndrome as a "devastating diagnosis".  The word "devastating" stung me.  I was offended on behalf of my sister because there is nothing "devastating" about her.  I was discussing this with my friend, Christy, who received the diagnosis for her little girl three years ago and she said: 

"It felt devastating to us, but that's because we were told it was devastating!  We need to change the way society looks at our loved ones because the perception is not reality."

I've recently been asked to blog more about the sibling relationship - particularly, my experiences growing up with a sibling with Down syndrome.  One of the most frequently asked questions I receive is how my parents told me Leanne has Down syndrome.

 This question has always struck me a little funny but I try to imagine where the parent is coming from.  You've just received MAJOR news.  The baby you were expecting is not the baby you received and your mind is filled with questions, your heart is filled with uncertainty, and you're trying to make sense of it all.  Then, it occurs to you that you're going to have to break this all down into a simple discussion that is easy for a child to digest.  I can imagine how daunting the prospect of that is considering you're not quite sure how to digest it yourself. 

 But here's the thing about kids: kids aren't born with bias, judgment, or prejudice.  Those things are learned later on.  Kids are inherently innocent and accepting.  Kids don't care about epicathal folds, simian creases or enlarged tongues.  I never questioned why Leanne had slanty eyes or a flat nasal bridge anymore than I questioned why she had blond hair and I had brown hair.  She was my big sister and she was the best as far I was concerned!

 So to answer the question posted to me by many concerned parents, I suppose that my parents decided to leave well enough alone and to let Leanne and I build a sibling relationship without any big "talk" about our differences.  Now, that's not to say that the topic of Down syndrome was avoided entirely; my parents were always very open and comfortable talking about Down syndrome.  However, it just was not a feature of Leanne that they felt the need to single out and explore in great depth with me.  As questions arose, they answered them honestly and without any inkling of any internal doubt they may have experienced.  

In fact, I recently commended my mom; I told her that if she or my dad ever experienced feelings of upset, doubt, grief or mourning related to Leanne's diagnosis, I never detected an ounce of it.  All I remember growing up is having two parents who loved and accepted Leanne and I unconditionally.  I felt like they were proud of us.  I felt like the focus was on our abilities and never what we lacked.  As far as I was concerned, my upbringing was happy, healthy, and "normal."

What about the distinct differences?  What about the delays?  What about the therapies?  As a parent of a two-and-a-half year-old typically developing daughter, I can tell you that Merryn already realizes that Josie needs additional help with some things.  Heck, Merryn is the first to jump in and offer assistance.  But she does so from a place of complete innocence - there is no judgement nor pity behind her actions.  She just loves her sister and she wants to help her.  She knows Josie has therapy and she knows that some therapies she can't participate in.  But she doesn't question that because it's completely normal to her.  Merryn doesn't know that the neighbor kid's sibling doesn't have therapy and she really doesn't care.  She's a child.  She doesn't view the world the same way adults do.

As I got older, did I eventually realize that having a sibling with Down syndrome was not exactly commonplace?  I'm sure I did.  But because of the tone of acceptance set by my parents, it was never a sticking point.  It truly never bothered me.  And from what I'd seen, it never bothered them.  But most importantly, it clearly did not bother Leanne.  I would challenge you to find an individual with a greater sense of confidence and self-worth than my sister.  We should all be so lucky.

One of my favorite articles on the topic of Down syndrome was written by George Will, whose oldest son has Down syndrome.  The piece reflects back on his son, Jon's, 40th birthday.  He discusses receiving a Down syndrome diagnosis during a time when people with Down syndrome were expected to have "necessarily bleak futures."  He points out how unfortunate this attitude is, because Jon taught him that the world would be better for having more people with Down syndrome in it.

Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

Even when society sends the message that individuals with Down syndrome are genetic flaws who somehow fall short of what constitutes a satisfactory human life, those of us who have years of experience to draw from, beg to differ.  

I believe my parents would share George Will's perspective about Down syndrome, and I, in turn, agree wholeheartedly.  Despite  possessing what some may perceive are blatant shortcomings, Leanne's life is fulfilling and  purposeful.  She has so much to offer to those who are willing to set aside negative bias and realize that Down syndrome did not alter the trajectory of her life.  She is an individual with Down syndrome and that is exactly who God intended her to be.

I have read more than one parent of a child with Down syndrome reflect back on how their attitude has changed since receiving the diagnosis with the sentiment 'I wish I had known then what I know now' and I believe George Will's article gives us a glimpse into that perspective after 40 years of experience.  He speaks about Jon's "gift of serenity" as if to challenge us with the question 'If Jon is okay with Jon, who is anyone else to say he's inferior?'

I would strongly encourage everyone to read George Will's article (click HERE).

I've referenced this beautifully thought-provoking piece in the past and I reserve the right to reference it as many times as it seems to apply in the future because it speaks to my heart.  And I hope that parents whose children have just received a Down syndrome diagnosis can use our experience to help navigate beyond the uncertainty and fears and to find comfort and serenity.